Treatment Update – 1 Year And 4 Months Later

6 Jul

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Treatment Update – Going On Year 2

I was going to wait until I was a year and a half into Lyme treatment before I posted an update but I can pretty much tell it will be the same as today. I wish I had better news but I don’t. At my last visit with the LLMD we established that not much has improved since I first began treatment in March, 2011. I was on meds for Fibromyalgia a year before in 2010 and none of those meds helped either.

Since March of 2011 I now have even more symptoms then then since my first visit. I think the only symptom that has progressed or more like calmed down is my tremors. I was throwing, dropping and having uncontrollable jerks in my hands when holding items. I also would shake bad in my whole arms, hands and fingers. It was tough to eat soup or use a study hand for anything that needed one.

I wouldn’t say my LLMD is doing a poor job because I do get symptoms/medical issues and what he prescribes me does make them go away but just not for good. One example is my mouth sores and chronic strep throat. I was having what felt like razor blades in my throat and sores in my mouth so it was difficult to eat. I took what was recommended by my LLMD and so far they haven’t been back but they would come and go frequently.

My quality of life is still very poor and I am still unable to leave the house, literally. I can still walk so that is good but I walk from my room to my chair or to the bathroom mostly. It seems like my insomnia and CFS like to battle each other. One week I get 30 minutes of sleep on average and the next week I cannot wake up. I will be so exhausted or feeling so bad I can’t talk, move or sit up.

I have been on a lot of meds and different protocols and tried almost every recommendation given to me by others. If I hear how someone feels almost normal and is back having fun I will try what they used. They problem is nothing is working so far and it gets very expensive for no progress.

I still have hope and I know this is a long tough road. I was told from the begging of treatment this could be 5-8 years of treatment before I feel any relief but I know some who feel better year 1 or 2. I just think every case is different and I have had these bugs so long so they can’t be killed so easy. I have cyst and biofilm form and I need to knock down there force fields and kick butt.

I will continue to use treatment as long as I can since I figure doing nothing will only let these bugs continue to ruin my body and mind. I am taking a small break from the aggressive/hardcore antibiotic treatment and 50 pills a day and doing an herbal treatment for now with only one antibiotic. So far no changes but there always hope.

On a positive and lighter note I have seen a few Facebook friends who are feeling much better. They may be in remission. The ones who are feeling better though have only had Lyme for a short time and were treated right away. But that is good to see and I am happy to see any Lymie have success and keeps me fighting.

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Improvements:

  • Tremors calmed down
  • 100’s of small parasite zits on forehead cleared up after 3 years of having them
  • IBS is much better being on 2 probiotic
  • Ankle pain went from a 10 down to a 6 on the pain scale
  • Cold sores, mouth sores and strep throat have calmed down
  • Appetite is somewhat back
  • Taste buds can taste again but not 100%
  • Oral candida (white tongue) going away
  • Ringing in ears not as loud (daily ringing, crickets and buzzing)
  • Slightly less head pressure
  • Craving for food is rare but I do on occasion crave Mexican or Onion Rings lol
  • Passing out has ceased for now (yay!)
  • Seizures have calmed

New And Worse Symptoms:

  • Herpes, candida and yeast – NEW (genital area skin is peeling – gross help me!)
  • CFS, Exhaustion, Fatigue, Lethargy
  • Memory loss is really bad both long-term and short-term
  • Depression (from being single and lonely and from Lyme)
  • Not excitement or butterflies…etc – due to depression most likely
  • No strength and it’s even hard to open a cap on a drink
  • Headaches and migraines are more frequent
  • Nausea is more frequent with dry heaves and vomiting
  • Car ride to LLMD makes me sleep for 3 days or get extra exhausted
  • Neck and arms still numb, tingly, and loss of feeling. Neck is stiff and 10 on pain scale
  • Sensitive teeth to hot and cold
  • Cuts in gums – NEW
  • Seeing bright orange spots by the hundreds when I look outside at he sky
  • Turrets in my neck is worse and shakes like a bobble head
  • Cognitive issues
  • Plus more but I forget ……….

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7 Responses to “Treatment Update – 1 Year And 4 Months Later”

  1. Rita Scott July 9, 2012 at 7:24 pm #

    Do you hear a heart beat in your head? Mine comes and goes, I think it is the cycle of Lyme and Babesia Duncani. I am also dropping things, very mild trembling in hands, but I’ve broken two glasses in the past two days. : ( I’m afraid. I’ve been on antibiotics now for over 3 months after taking two weeks of doxy when I first got the bullseye rash. I have a lot of your symptoms but mainly I have this strange vibration feeling in my body, extreme right foot pain to walk on, migraines, off balance, stenosis of my veins, blurred vision and feel extremely hot at night. Just wondering if you hear a heart beat in your head? At one point I had vasculitis in my brain. The last test showed that it had cleared, but I really believe it is in a cycle.

    • 49erBry July 9, 2012 at 8:15 pm #

      Yeah I hear my heart beat in my head and the blood swishing around. This is from the head filling with fluid and being inflamed. During a herx it gets really loud. The antibiotics can cause a lot of side effects. Some people can handle them but most cannot. I do a combo of antibiotics and herbals. I did aggressive antibiotics for over a year with hardly any issues. If you don’t handle abx well you may want to switch to herbals. But all of your symptoms sounds just like common Lyme and coinfection symptoms and not abx side effects. Stay strong it’s a long battle.

      You may want to ask for the MTHFR test. If you have the mutant gene or two like I do it can cause issues with the veins and blood and possibly vasculitis. You will just need a life long pill to help you with the issue.

  2. Rita Scott July 9, 2012 at 7:29 pm #

    Have you tried Tincture of Teasel Root? And a no sugar/vinegar/wheat diet? I noticed if I have sugar that my symptoms are worse.

    • 49erBry July 9, 2012 at 8:10 pm #

      Haven’t tried teasel since I have tried everything else and nothing works. My LLMD didn’t really recommend teasel and had me stop samento, pinella and banderol to put be on Byron White formulas instead. I did the diet for about a year and did not notice any difference. I did no sugar, no gluten, no soy, no dairy….. I think I may have more than just Lyme and coinfections and Fibromyalgia.

      • Rita Scott August 1, 2012 at 8:27 pm #

        I’m sorry…

  3. LML February 3, 2014 at 12:35 am #

    Hi there,

    I was googling for information on Babesia and circulation issues and your blog came up. What I am going to say is completely not related to Babesia though as I just read through your post and wanted to make a couple of recommendations for you. If you already know what I am writing or have written about it before – please forgive – it is my first time reading your blog! Thanks

    1 – I noticed you have lost taste in your tastebuds and write that it is slowly returning. My suggestion for you would be to take zinc piconolate 30mg or more. Why 1) Zinc has alot to do with our ability to taste. 2) Lyme bacteria use up zinc to replicate and patients with Lyme often have a zinc deficiency although it doesn’t always show up on tests. 3) Alkaline Phosphatase that is on the low end can be behind the scenes indicator of a zinc deficiency. I

    2. Seizures. Obviously the causes of these can be numerous. But in Lyme Disease, Ammonia can be a primary neurotoxin that stays in the body and is not excreted and even more so with a MTHFR deficiency. Ammonia can cause seizures. Zeolite binds ammonia and safely removes it from the body and for me it carried nary a side effect. Felt so much better.

    All the best!

    • 49erBry February 3, 2014 at 11:24 pm #

      Very useful info and I have the bad MTHFR mutation both bad genes c677t. I will give those a try and see if they help. Thnak you/.

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